Nip Pain in the bud & let your Soul blossom

Wednesday, May 3, 2017

I just returned from the Grand Canyon and I want to share my experience in the hope of encouraging others with disabilities and/or health issues to go there. The focus on this post is for those with mobility limitations or those who use a wheelchair. I used my wheelchair almost 100% of the time in order to prevent me from walking and standing too much, so we took notes about the pros & cons of accessibility during our trip. It is our hope that it helps someone enjoy the wonders of the canyon regardless of their ability. We were not compensated in any way for writing this review, and no one was aware that we were taking notes. I tried to make this post as comprehensive as possible, so it is very long and jumps to another page. It covers the train, rooms, food, tours, and much more. This review is solely based on my perspectives during the trip I took in April 2017.

Our trip to the South Rim of the Grand Canyon was amazing! Traveling by train was definitely the way to go. It proved to be easy, accessible, and simplified getting to and returning from the canyon. The weather was cold but we were blessed to have a chance to stand on the canyon rim and see such stunning views. It really defies description, but must be seen to truly experience the scale of the canyon, the vivid colors, and the dizzying height. We saw so many animals from elk, to javelinas, to condors. It was a wonderful trip after years of wanting to go.

THE TRAIN

The Grand Canyon Railway offers the choice of just a day trip to the canyon or various packages which combine staying in the park and/or taking tours. We booked a three night / four day package with the Railway, which is based out of Williams, Arizona. Our first night we stayed at the Railway Hotel In Williams in one of their ADA rooms. It was an extremely nice room which had a roll-in shower with grab bars, fold down bench, and a hand-held shower which was mounted so that a standing person could also use it like a normal shower. Plugs for charging electronic devices were available on the bases of the table lamps, making them easily accessible to use. The common areas of the hotel had accommodations for those with mobility limitations in mind as well. A buffet dinner was provided as part of our package. Although it did not the greatest variety of food options, we found the pasta station to be delicious, which offered items to be freshly sauteed while you waited.

On the morning of our second day, we boarded the train at 9:15 after watching a fun wild west cowboy shootout. The train staff was very helpful with the boarding process. They have a special lift to load patrons in wheelchairs plus those who cannot climb up steps to get on board. We were in the “A” coach class car which was a remodeled 1950s era commuter car; it had a spot for wheelchair parking with a bench seat right behind it for companions. I chose to park my chair and join my husband on the bench seat.

The restroom was fully accessible and adjacent to the wheelchair parking area. However, if you need to side transfer onto a toilet, it was impossible to do so in the narrow space. However, there is room for another person to be inside the bathroom with you if required. One cautionary note: the bathroom door slides sideways to open and close. At one point when the train was on a mile downhill slope, the door slid closed on my arm when I was exiting the bathroom, causing a bruise and the need to apply an icepack. Luckily I suffered no long term effects and we filled out an accident report to be on the safe side. Have your travel buddy hold the door when you enter and exit!

Not every car which was a part of our train was the same type. There were remodelled 1920s Pullman cars which were adorably vintage, but I noticed that the bench seats looked less padded and not as comfortable as the seats in the car to which we were assigned. There were also other classes of train cars (which I did not get to see) including first class, domed, and luxury. If you have specific needs, be sure to mention them when you make your train reservation so they can put you in the train car which best suits you.

All the aisles in the train cars are wide enough to allow for wheelchair passage. However, the doors between the cars would be hard to open from a seated position, especially when the train is in motion, so ask for assistance. A trip to the 1950’s dining car is totally worth it just to see. It offers pre-packaged snacks like chips and beverages ranging from hot chocolate to root beer floats.

The wheelchair lift to get me on to the train

The train ride to Grand Canyon National Park takes about 2 ½ hours. Each train car has its own attendant and they serve as a tour guide as well. Our inbound train had Laura and the outbound attendant was Amber. They were both knowledgeable and entertaining. There was also a singer who played guitar and sang for part of the journey. On the return trip, there is even a train robbery! The Marshall (who is also the mayor of Williams) was funny and a real character. The actual robbery could have been even more fun -- as we used to be part of the Silverado Wild West Company and stage bank robberies at the San Jose Historical Museum in CA, we couldn’t help thinking of how we would have added to their script and made it more playful. But we really did enjoy it and were glad it was part of the train trip.

On the issue of luggage: I had been told that we would only be allowed one checked suitcase plus whatever we could hold on our laps. I always have to travel with a separate suitcase full of foam pillows, pads, and other necessary things. I made sure to get a medical exemption from the Railway the day before. After spending the night in the hotel, we took our bags to the lobby where they were tagged for their final destination. This meant that once our train arrived at the canyon, we were immediately able to begin sightseeing. The Railway delivered our luggage to our lodge which was then taken directly to our room. We never had to pick up our bags or move them anywhere. The same was true when we checked out. All we did was attached a new set of tags to each bag and leave them inside our hotel room and the Railway retrieved them and loaded them for the return trip. We were freed from having to worry about our bags while we enjoyed our last day there.

OUR ROOM

We stayed at the Cliffrose building of Maswik Lodge. The ADA room was comfortable but rather dated, as it was constructed in the 1960s. The bathroom had a roll-in shower with grab bars for both shower and toilet, and a fold down bench in the shower.. The hand-held shower head was not mounted in a way so that it could be used any other way than by being held. The room had a mini fridge but no microwave. It had few usable electrical outlets. We had to unplug things like the coffee maker and the room clock in order to charge our electronic devices, the power wheelchair, and to plug in my husband’s CPAP machine. One big negative is that the outlets were all down near the baseboards...(continued)

Tuesday, December 20, 2016

I want to offer a warning that is often hard to hear. We all have health issues that limit us in some way, and we know when we push our bodies too hard bad things can result. Recently, I saw that happen to someone else and it was so traumatizing I want to share it. My aim is to remind us all to be honest about our limitations, cautious in our environment, and to accept the aids & assistive devices that we need (even when we don't want to).

I had just finished swimming & chatting with a friend at the warm water pool. She is in her 70s and uses a walker, but like all of us with physical issues & stubbornness (I'm raising my own hand here) she doesn't use it all the time. She was moving around the changing area and scuffed her shoe where the floor slightly slopes downward to a drain. She tried to recover but kept stumbling forward. She smashed her head into the wall with an awful sound, trapped her shoulder between a bench and the wall, and crashed into the cement floor. As soon as she hit the floor I knew it was bad and started screaming for help. Lifeguards called for an ambulance.

I could tell right away she had a dislocated shoulder. When they got it straightened out, she started yelling about her knee... it was a compound fracture and looked horrid. She has since had to have surgery for the knee and is now moved to rehab. She lives alone, and this will affect her independence going forward.

I'm not telling this tale to shock, but to remind us that denying our limitations and not using our aids can really hurt us short and long term. It only takes one misstep to threatened our overall health and independence -- whether we refuse to use our cane and fall, eat something we know will trigger a problem, push beyond our physical endurance and create an injury, etc.

I hate that my body makes me so vulnerable and creates so many limitations, but I know that not honestly respecting them will only hurt me. Sometimes that hurt is temporary, but it can also permanently change our lives.

Sunday, August 28, 2016

Sorry that it's been a very long time since my last blog post! I had to stop when we began our handicapped bathroom remodel, and when we were done there was just so much going on in my life that I had to let my blog slide. I didn't mean for it to be so long, and I'm hoping to post now and then. Since the bathroom remodel has been such an amazing thing for me, I'm going to share what we did.

The bulk of 2015 for us was consumed with one major focus: a complete remodel of our master bathroom to make it accessible and barrier-free. We knew eventually I would need a completely open shower, and after a few near falls stepping over the bathtub, it was clearly time.

We spent months planning out every inch of the room and evaluating products for its function. It was difficult for me to wrap my brain around an 2-D architectural schematic, so my husband taught himself how to use a CAD drafting program. He was able to scan the contractor's drawings into the computer so the bathroom could be accurately viewed from every angle and show spatial relationships. Although we had not planned to do that in the beginning, taking that step with CAD helped us avoid problems we had not anticipated and was an incredibly important step in making the design meet our expectations.

This was our old bathroom - narrow and dark!

With help from our contractor, we plotted out the ultimate barrier-free design. Since our original bathroom was so skinny and small, we had to move an entire wall and poach two feet of space from our guest room to make enough room for the wheelchair to maneuver easily and the design also required removing a second wall. At last the old bathroom was gutted, jack-hammered down to the dirt, plumbing moved, and everything built back up from scratch.

Our finished accessible barrier-free bathroom!

After nearly 10 weeks of construction, it was finished! The exciting part is that our bathroom turned out even better than we hoped! It is not only a beautiful space, it has complete accessibility. Here are some of the amazing changes we made:

~There is a normal height sink to use when standing, and a lower sink to use from a sitting position.

~Opposite the lower sink is a vanity area where I can do make-up and hair, and it is open underneath so I can use a stool or wheelchair.

~The shower is completely open with no step, lip, or barrier of any kind -- not even a curtain!

~The floor is slightly sloped so that no water runs out into the room.

~Because the shower is so open, I was worried about getting cold when showering so we installed an overhead heater that can warm up the space in just 5 minutes. It's one of the best parts of the remodel!

~There's a corner bench in the shower, so I can sit down if I need to, and close to it is a light-weight hand-held shower head on a long hose so I can comfortably use it.

~We chose plumbing fixtures for low hand-strength.

~Since we wanted to make the shower easy to use, we installed thermostatic control so the water temperature is controlled at the entrance; the water is just the temperature I want before I step into the stream.

~We also installed square grab bars on all walls of the shower and toilet area. I think the square bars do not let a wet hand slip off easily, and therefore, I believe they are safer.

~My husband built me a special light-up vanity mirror. I can pull it closer to me so I can see better, since I am so very near-sighted.

A panorama photo of the pocket door, double sinks, and vanity.

All these things I listed are just part of what makes the room so function, accessible, and beautiful. The old bathroom was dark, lacked storage, was too narrow for a wheelchair, the tall bathtub was a fall-risk for me, plus the room was ugly. Our newly remodeled bathroom is open, barrier-free, bright, pretty, and a joy to use!

If you decide to build an accessible barrier-free bathroom, there is so much you can do before the actual construction starts so that you really know what you are getting. There are so many products to choose from which can make your space amazingly functional, whether someone is able-bodied or has physical limitations. And don't think that accessible and functional means the bathroom will look utilitarian or blah; it can still be a gorgeous space!

If you have an accessible bathroom, please share a photo in the comments -- I'd love to see what yours looks like!

My cat, Jaspurr, sitting on the shower bench.He loves to catch the drips!

Wednesday, September 9, 2015

Today is the 1st annual Pain Reality Day. It is our chance as pain patients and those connected to us to educate others what it’s really like to live w/ Chronic Pain—all day 9/9/15 via the Internet. This is an advocacy event that will take place across the whole of the web—every blog, Twitter account, YouTube video and Facebook page belonging to people impacted by pain. Don’t forget to add the hashtag #PainRealityDay to each post, video or blog entry! Read more about this new annual pain advocacy event by going HERE. These are just some of my pain realities.... Living with chronic pain is exhausting. Sometimes just making it to noon is all I can do before I desperately need to take a nap. I can't get a normal night's sleep because lying in bed is too painful, even for a small number of consecutive hours. Sitting or standing for short periods of time can hurt so much that I can't stop shifting around, which I know can be distracting or look strange especially in a movie theater or in church. I always have to have pillows to sit on wherever I go. What am I supposed to do when I'm using my wheelchair in a public place and suddenly sitting in it hurts so much that I can't bear to sit any longer... but I can't just walk away from my chair and leave it behind, because walking hurts, too?

Cactus in my old garden in California.

Everything I do makes me pay a price in pain. Sometimes I can hide it well and look completely normal. Other times it's all I can do to struggle back to my car at the grocery store, or sit through a traffic jam without holding myself up off of the seat, or to just fake that I'm fine a tiny bit longer so I can get home from some event and let my guard down because I worry what people will think of me. But don't think I do not have a good life. It just takes more effort and sometimes I struggle. Even a cactus, with all its painful spines, will beautifully bloom. You have to learn to embrace joy, express gratitude, and honor God's blessings.Note: I'm sorry I haven't been posting regularly, but we are right in the middle of our accessible bathroom remodel and with our home in dusty disarray I'm not able to live there. I will not be doing weekly blog posts until things get back to normal, hopefully in a couple of weeks. But if something like this new advocacy event comes along or there is an vitally important pain news story, I will pop in and post. I'll be back when I can!

Wednesday, August 19, 2015

NOTE: Another week, another missed deadline and short post. Sorry, but it’s been total craziness here as we prepare for my handicapped accessible bathroom remodel project. I may not be able to post at all next week because we actually start breaking down walls on Monday. I promise I’ll do my best to keep posting while in the midst of all the dust and noise.

Time for Tuesday-Newsday! The Featured Blog Posts this week are all connected to communicating with others about our chronic pain/illness.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING: My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. As is the case with any health info, ALWAYS get your doctor's opinion first!

Even if a Featured Blog Post is written specifically with emphasis on one chronic pain condition, it may still have information and ideas which can help people with any type of chronic pain/illness. I always select posts which I think can provide help for the widest audience.

Tuesday, August 11, 2015

[NOTE: Due to a pain flare and being overwhelmed with planning all the details for our accessible bathroom remodel, this week will be a shorter post.]

Time for Tuesday-Newsday! The Featured Blog Posts this week are all connected to coping with life when you are stuck in bed or at home due to a pain/illness flare-up

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING: My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. As is the case with any health info, ALWAYS get your doctor's opinion first!

Even if a Featured Blog Post is written specifically with emphasis on one chronic pain condition, it may still have information and ideas which can help people with any type of chronic pain/illness. I always select posts which I think can provide help for the widest audience.

Tuesday, August 4, 2015

Time for Tuesday-Newsday! The Featured Blog Posts this week are the excellent series: "The Four Agreements".

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING: My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. As is the case with any health info, ALWAYS get your doctor's opinion first!

Even if a Featured Blog Post is written specifically with emphasis on one chronic pain condition, it may still have information and ideas which can help people with any type of chronic pain/illness. I always select posts which I think can provide help for the widest audience.

Here is an excellent set of writings that are a must-read: The Four Agreements series by Tammy Rome. Although the series is written specifically for those who have migraines/headaches, those with any type of chronic painful condition will benefit from reading it.

"A good Garden may have some Weeds."

I like to think of Life as a Garden... with the blossoming flowers as our souls fed by the happiness we cultivate.

Chronic Pain is like a persistent weed that threatens to take over our garden when we have chronic pain/illness.

Although we may not be able to stop the invasion of weeds, we can find ways lessen their impact in our lives: to remove the weeds we can, to obstruct their growth by treating them, or to step over them & choose instead to focus on 'stopping to smell the roses'.

This blog is about living a joyful life despite chronic pain: by being educated on your pain condition, becoming a smart patient, finding inspiration, and then opening yourself up & finding creative ways to experience life.

About Me

I am believed to have Ehlers Danlos Syndrome III - Hypermobility Type, which is a painful genetic disease that affects collagen and connective tissues... but there are some doctors who say I likely have a mutation of EDS or another connective tissue disorder.
I love my husband and my cats!